Tuskegee Legacy Discourages Trial Participation by Blacks

Action Points

Explain that the study found significant differences between black and white participants in their trust level toward medical researchers and their willingness to participate in clinical studies.

Point out that attitudes toward the hypothetical study presented in the survey may differ from an actual situation.

BALTIMORE, Jan. 14 -- African Americans are still suspicious of the clinical research establishment, some 35 years after details of the infamous Tuskegee study of untreated syphilis were revealed, researchers here said.

More than twice as many blacks as white believe physicians secretly experiment on patients, reported Neil R. Powe, M.D., M.P.H., and colleagues at Johns Hopkins in the January issue of Medicine.

The researchers said this was the first study to quantify different perceptions of risk associated with clinical trials by race. They wanted to explore the difficulty noted by many earlier researchers in enrolling African-American participants in clinical trials.

58% of blacks and 25% (P<0.0001) of whites said that doctors had previously experimented on them without their consent.

24% of blacks and 15% (P=0.002) of whites said their physicians would ask them to participate in dangerous medical experiments.

35% of blacks and 16% (P<0.001) of whites said physicians prescribe drugs as a way of experimenting on patients without their consent.

27% of blacks and 39% (P=0.0001) of whites were willing to participate in a hypothetical trial of a drug for preventing cardiovascular disease.

The investigators approached 1,440 persons to participate in the survey. Complete data were available from 717 for an analyzable response rate of 50%. These participants included 460 whites and 257 blacks.

The black participants were significantly younger, poorer, and more likely to be female and on Medicaid. They also had a different spectrum of chronic conditions, such as lower rates of coronary artery disease and higher rates of hypertension and current smoking.

Recruiters informed study participants that the survey was meant to explore individuals' attitudes about medical research and physicians who perform such research, and reasons for agreeing or declining to participate in clinical trials.

The impact of race was attenuated and nonsignificant after adjustment for potential mediating factors of racial differences in medical researcher distrust and perceived risk of harm (explanatory model OR: 0.84, 95% CI: 0.54 to 1.30).

The study questionnaire did not ask specifically about the source of mistrust of medical experimentation. The Hopkins group said it could stem from a general distrust of mainstream society, perceived and real biases in the overall health care system affecting minorities, and what they termed "gross past examples of unethical medical research with ethnic minorities."

Most notable among the latter was the so-called Tuskegee study conducted from the 1930s to 1972, in which poor blacks in Alabama with syphilis were unknowingly left untreated.

"So long as the legacy of Tuskegee persists, African Americans will be left out of important findings about the latest treatments for diseases, especially those that take a greater toll on African Americans and consequently may not have ready or equal access to the latest medicines," said Dr. Powe.

Earlier studies have linked recollections of the Tuskegee study and general African-American mistrust of medical research to unwillingness to participate in clinical studies. However, the Hopkins group said, that research did not compare such distrust among different racial groups.

They suggested that efforts to increase African-American participation in trials that focus on increasing access may not be entirely successful unless the trust problem is also addressed.

Dr. Powe said the mistrust "may be fixable by communicating better with patients and taking actions that improve mutual respect and understanding."

He said "cultural competence" can be taught in medical schools to help physicians instill trust among their patients. Increasing the number of African Americans in medicine would also help substantially, he said.

Fostering long-term relationships among patients, community leaders and health care providers is one approach recommended by the authors. They also suggested increased educational effort and improved sensitivity on the part of the research establishment to cultural and local social norms.

The researchers identified the nature of their hypothetical drug trial as a limitation to their study. Responses to a real-world opportunity to participate in a trial may have differed, they said.

The study was funded by the Robert Wood Johnson Foundation.

One co-author reported that he is employed by and a major shareholder of LifeTech Research Inc. and Centegen Inc. Neither of these organizations provided any study funding or had any influence whatsoever on the contents of the manuscript. No other potential conflicts were reported.

Reviewed by Zalman S. Agus, MD Emeritus Professor University of Pennsylvania School of Medicine

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